Monday, April 30, 2012

The kind of hurt that's deep because it's done by someone who calls me 'friend'.

It's way to personal to tell you what happened. But here's the thing. I had choices.

1) I could be forgiving.

2) I could turn the other cheek.

3) I could 'be the bigger man'.

Yep.

I had choices.

And I chose to be ...

1) petty.

2) angry.

3) unforgiving.

And here's the absolute truth. I'm OK with that. I do try to be the kind of person who is kind. I do try to be open to forgiveness. I do try to see my own role in my own wounding. I do. And all of those things are the kind of attributes I want to have, aspects of the person I want to be.

But.

Not all the time.

I learned, when I felt the knife cut deep into my heart, again, how much betrayal hurts. I learned, when I understood just how I have been played for a fool, how good nature can leave one vulnerable. I learned, when the realization fully hit, that there are actions which have real consequences. And that sometimes that consequence is that I am changed - in my feelings, in my relationships and in my willingness to 'give a little more'.

Now I'm getting looks like 'what's the big deal - I've only done to you what you've let me do to you for a very long time?' I'm getting those sideways glances that say, 'come on, this is the dance we dance, why not dance it once more time.'

A truth that becomes hidden under lies, and threats, and fears, is that we all have the ultimate power in our relationships with others. The Power of Goodbye is both complete and absolute. I forget that when, now and again, I get enmeshed in a relationship that isn't about reciprocity but about abuse of trust.

So, I'm hurt.

Both by the realization of what's been going on for so long and by how I'd been duped because of my affections. While I've stood up and taught people abuse prevention skills, I've been completely allowing it to happen - unchallenged.

So I've given myself permission ot be ...

1) petty

2) angry

3) unforgiving.

And I'm OK with that, because that' exactly what it's going to take to become OK again.

Sunday, April 29, 2012

We are about to head to New York City where we will attend the YAI conference again this year. However, this year will be different in one major way. Manuela is not here with us. It had become tradition for us to travel down to NYC together, in a rented van, and attend the conference. We'd stop in Binghamton at Wegmans for dinner on the way down and dinner on the way back. We'd introduced her to their 'Garden Cafe' and she loved it as much as we did.

The drive, there and back, was full of chat and chatter and lots and lots of laughter. We'd plan out things for the coming year, dream big dreams, share dark secrets. Busy people, even those who work together daily, sometimes need to be shut up in a moving vehicle to be able to actually connect. And connect we did. It was on those drives that our friendship renewed and solidified itself.

In New York, itself, we always went to Ellen's Stardust Diner, one of my favourite restaurants in the world, for dinner and I can still remember Manuela being captivated by the atmosphere and the music and the food. It was great to share something with her that she, too, came to love. Joe and she had their own traditions. They'd get up really early, for them, and go out for a walk up to Central Park. Every morning. Joe never told me what they talked about, this was their time and it was private. I respected that, and after maybe ten times, never asked.

There's more. Like Manuela's shopping at Macy's. Like, even, the conference itself. Like so many things.

Like so many things that aren't going to happen this year.

Manuela passed away almost a year ago. She was a young woman. She was a vital woman. She was very alive. And then she wasn't.

And I miss her.

Particularly now.

It's morning.

It's dark.

I'm feeling sad.

The trip is ahead of us. I know we'll have fun. I know that we'll go back to Ellen's, I know that we'll do what we always do in New York. I know that we'll continue with our traditions. I know that.

Saturday, April 28, 2012

I was in the Super Stop and Shop near where were are staying. We've got a kitchen and were shopping to make dinner. I went down the 'Seasonal Items' aisle, always looking for things for the kids. They had one of those wire racks, covered in toys and gadgets. I reached out to spin it around and it toppled over. Crashed to the ground. I immediately felt guilty. I wanted everyone to know that I just touched it and it fell. It was completely top heavy. Two people came to get it all back in order and I apologized blushing like I had purposely done it. But it was an accident.

They were nice about it. They both commented on how the thing was overloaded with stuff. I rolled quickly away. Joe joined me and noticed the mess and I confessed to my part in knocking stuff over. I told him that the staff had been nice and it was all settled. A little later they strolled by and greeted both Joe and I saying the aisle was clear again if I wanted to continue shopping.

I didn't want to go anywhere near it.

The next day, we were back, again picking up stuff for dinner. I was rolling down one of the aisles and the woman from the day before approached me, from behind startling me, and said, "Don't go knocking things over again today!" I knew there was fun in her voice but sometimes my temper gets the better of my temperament and I was annoyed. I said, "It was an ACCIDENT." She nodded and rushed away.

I fumed a bit, decided to blog on this. "Come on," I thought, "let it go." I felt intruded upon. I felt singled out. I felt that everyone had heard her. My mood soured.

On our way to the car Joe said, "Oh, guess what, I saw the woman from yesterday and I said to her, 'The guy in the wheelchair is in the store today, prepare the clean up crew.'" He told me about how they both laughed.

Oh no.

She probably came to me after that conversation and continued the joke. Being friendly and all that. And me ... well I chose to read something very, very, very, different in the interaction.

Many of you remind me that I need to be careful about how I see situations and I listen to what you say. I try hard to be careful about how I 'see' what's happening around me.

This time I got it so wrong.

And I wasn't very nice.

Maybe sometimes when I anticipate prejudice I find it through being prejudiced myself.

Friday, April 27, 2012

Thursday, April 26, 2012

I was tired. Joe looked determined as he made his way through the auditorium towards where I sat at the podium. We had a drive ahead of us and wanted to get going. I saw him coming. Just before he arrived, I felt, more than heard, a gentle voice calling my attention. I turned to look into worried eyes. "I wonder if I could ask you a question about a very personal matter." I felt time pull with the force of gravity. I wanted to be on my way. I'm not good with questions at the end of a lecture day, I'm tired from expending energy all day, my mind has trouble focusing on anything but getting out the door and on the road.

But there was worry at the back of her eyes.

When she realized we were about to rush off, she apologized and stepped away. I felt the moment grab me by my shoulders and hold me in place. I arranged for Joe to take the stuff off the podium, briefcase, notes, Thermos and cup out to the car. I asked her what was on her mind.

She told me that all day she had thought about something that she had done very recently. One of her children has a friend who she is close to. "He calls me 'Mom'," she said with real warmth and pride. Then she told me that this fellow came to her, confused about his sexuality, needing to talk to someone, thinking he was probably gay. She knew that what had happened was an act of trust and a testament to the relationship he had with her.

Since speaking to him, her reaction has weighed on her. She had been taken by surprise and spoke to him about his sexuality in the context of sinfulness. She knew she hurt him deeply. But she didn't know what else to say, she didn't know how better to react. She was confused herself.

That moment sent her on a personal journey. She read about how gay kids kill themselves when they find rejection in the world. She read about how one person showing love and support and acceptance can make the difference between life and death. She began to dig deep into her faith asking herself what she really believed. In her own heart, in her own mind, in her own relationship with God - she knew what she had been told to believe, but what did she believe? Her faith, she found, could withstand questioning. Her faith, she discovered, was mature enough to embrace, fully embrace, the idea of love.

She didn't want him to die.

She wanted him to feel her love, a deep love, that accepted him as made.

"What can I do now?" she asked.

"I don't know what to say to him," her voice was filled with worry, her eyes with pain.

I suggested she start with two words, "I'm sorry ..."

And that the rest would follow.

I laid my hand on her arm before she left and told her that I was so glad that we had spoken. That she had given me such hope. I love speaking to people who have the desire to be self-reflective, who have the desire to question themselves, who believe in a belief that wants to be and needs to be questioned. I told her that I was proud to have met her.

What I didn't tell her, is how much I needed, deeply needed, to meet her when I was a boy.

But that meeting her now, oddly, ministered to the part of me, that still needed to hear the love in her voice.

Wednesday, April 25, 2012

Our regular hotel in Ottawa has renovated and, as such, we don't feel quite 'fine' enough to have breakfast there. Or, frankly, rich enough. A couple of trips ago Joe discovered a restaurant across the street that was open for cheap and cheerful breakfasts. Traditionally, Mike and Joe would stroll over and pick up breakfast for all of us and we'd dine on beautiful white Styrofoam containers in the room The height of class I know. On this trip, the morning of the dance recital, I didn't want to eat in the room, so Joe scoped it out and told me that there was one step up into the restaurant, and that it was a big one. I was feeling adventuresome, so we decided that we'd all head over to Dunn's on Dalhousie.

We got there, I got out of the chair, and with many hands helping, I got up the step and back into the chair. We found a table and had a terrific breakfast. Joe, Marissa and I tried the Eggs Benedict on Bagels (substituting the ham with tomato), the kids had pancakes and Mike had the veggie burger and fries. We chatted about the day and were generally making merry. The waiter was hysterically funny and had us laughing as he served us. He felt comfortable enough to tease us all in that wonderful gentle way that some people have about them.

On our way out, I got through the door and got ready to get out of my chair when I noticed that a sturdy looking ramp had been installed so I could simply roll down. I was shocked. I hadn't asked for it and didn't know they had it. The waiter told us that they keep it just inside the door and anytime we want to come let them know and they'd put it in place. It was a wonderful ramp, long enough to get out easily and I could see that it would have been a tripping hazard for people on the narrowish sidewalk. We're going back to Dunn's next trip and the one after too.

Across the street is another restaurant, a big chain one, that serves Tex Mex and we all decided that's where we'd go after an afternoon celebrating and supporting the arts. We arrived. They have two doors, only one of which opens the other locked shut. I don't know why this is so common but it's annoying. The door that opened was a little narrow. We asked the woman who's job it was, ironically, to greet people, if that door opened. 'No!' she said in a flat firm voice, 'it doesn't open.'

Oh.

OK.

How odd.

I got up and we folded up the chair and got me in. I was annoyed at her brusque 'go away will you' tone. Once in, she smiled welcomingly, at the others and said, 'Good evening, how are you all today.' She said it like we'd had no previous interaction. I said, being ignored does not stop me, 'I'm annoyed.' We took our seats. Some of you may wonder why we didn't just leave and go elsewhere. Well three reasons, we were all tired, I had looked forward to fajitas all day, and - yeah right there's lots of accessible options.

As we were seated the manager spoke to me, having arrived a little after we got in, and said, 'Let me know when you are leaving and I'll open that other door for you. He was nice but ... too little, too late. As it turned out he couldn't open it up on our way out as it had rusted shut. He promised it would be opened the next time we came. Now there's an optimist.

Two restaurants. two very different attitudes to customer service. One understood the meaning of 'open door' policy, the other, literally did not.

Tuesday, April 24, 2012

Several have written asking me for photographs of the dance recital. Some have said that they can't imagine what an integrated dance troupe might look like. So today is just a photo album. I don't know the names of all involved so can't give credit where credit is due ...

Yes, that would be Ruby peeking out, she's playing a very curious fish!

This is from the second dance, as is the one above of Ruby. Mike couldn't take pictures of the first dance he was too moved at seeing Ruby up on stage to get the camera out. He and I agreed that sometimes It's better to live an experience in real time rather than watch it through a tiny screen. The woman in black is one of the teachers, Ximena Puente.

This is Jessie, I wrote about how Jessie welcomed Ruby on her first class. I don't think that without Jessie's encouragement, Ruby would have had the confidence to stay with the group. She's a good teacher and she's an amazingly gifted dancer.

This is Jessie, moving, dancing. We all agree it's one of our favourite dance photographs ever!

See that little girl in the middle, with the orange top and the red flower? That's our Ruby taking her final bow. If you click on these pictures you can see the look on her face.

Monday, April 23, 2012

When I first sat down in my wheelchair, my world didn't change but my experience of it did. Suddenly I was made unwelcome in places I had formerly gone. The hard cold edge of exclusion cuts deep at first. I had to learn to 'place' my anger properly. Learning that my status as 'outcast' comes from being 'cast out' ... that other other's othered me ... that a giant hand took an eraser and changed my vocabulary constantly belonging ...was the first step towards understanding that that my roll had changed my role. I had a job to do - a voice to use - a battle to fight.

And that battle, then, was a poorly understood one. I thought it was about 'stairs', I thought it was about ramps and curb cuts and wide aisles. I thought it was about the physical world that took prejudice and constructed monuments of inaccessibility in worship. This, very young, understanding of accessibility consumed me. I talked about it and wrote about it and thought about it ... I wrote letters, I staged protests, I spoke with managers. Anger, properly placed, is a powerful thing.

But one grows in understanding. As I matured from 'newly disabled' into 'truly disabled' ... I began to get it. I began to see that stairs are no where near as intimidating as stares. I began to understand that I'd much rather fight the former than face the latter. Suddenly there was simply no safe place. Anywhere. My weight, my wheelchair ... my DIFFERENCE ... screamed loudly every where I went. I couldn't ever simply blend in. I even grew grateful for those who had learned to pull their stare, no matter how firmly it stuck to me, away. I could feel glances rip off the skin of my being. I could feel the effort that eyes made to find something, anything, else to look at.

Children.

Children are the worst. Parents seem, en masse, to be oblivious to the eyes of their children. Little eyes peer at me, gawk at me. Little fingers point at me. Little hands pull at mother's dresses and father's pants, trying to get their attention, to get older eyes to see what younger eyes have discovered - huge difference. I hesitate to say here, but there are times, when I see a group of children, I head in a different direction. Sometimes I hide away. Waiting for them to be gone. They can, like a swarm of locusts, devour my self esteem in moments.

So yesterday, I rolled into the room where the dancers gathered before the big show. The Propeller Dance company's children's show was to start in a little less than ninety minutes. The older class and the younger class were together in the room. Make up was being applied to the dancers, kids were gathered together in the excitement of the moment. Suddenly, I realized that I was surrounded by children. I felt that fear creep up my spine, I readied myself for the assault, and ...

nothing happened.

Not one kid even looked.

A room without stairs, a room with stares ... a safe place.

I have few safe places.

These kids were so used to different that different wasn't different any more. Difference wasn't welcomed. Difference wasn't tolerated. Difference simply wasn't noticed. I found myself engaged in what was happening. Rolling over and by a group of kids to see Ruby get her make up put on. Rolling back by a different set of kids to chat with Marissa about the chaos around us.

And never.

Not once.

Was I hurt.

I've heard all the various reasons why inclusion matters and why inclusion should be encouraged. I even heard a presentation many years ago, when segregated schools for kids with disabilities were the norm, where the presenter listed 115 reasons why inclusion (although it was called 'integration' then) benefited children.

I hereby add one more reason to that list.

It creates a world of gentleness and safety.

And, forgive me for saying this, but we could use more of both.

During the show, I did what I was supposed to do. I got all teary watching Ruby do her dance. I got all mushy inside watching all the children work together to create art. I noticed and appreciated both the art and the message. I did. I really did.

But what I did mostly was allow those children, those magical children, to hold me safely and gently in their tiny hands and their huge hearts.

Sunday, April 22, 2012

It's the dress rehearsal for the Children's Show and I'm sitting watching chaos become art. During the first dance, Ruby was doing what she was supposed to be doing and when she was supposed to be doing it. But she was doing it with a shyness that characterizes her with people outside her family circle. It's always been there, and I've always been glad of it. I watched her watch others, she carefully placed herself. carefully moved her body. She was deeply thoughtful and entirely present in what she was doing.

Then.

A bit later in the piece she began moving reflexively. I sat up in my chair. Movements were beginning to come from within. Her arms were outstretched. And. She, for a few seconds at most, became transcendent. This is what art does. This is why children need to be given opportunities to express the inexpressible. This is why politics fears the arts. Transcendent souls are entirely, completely, free. I was moved to the core to see her this way. I see her like few others do, I'm in her circle of safety, so she runs and laughs and jokes and dances freely with us as she does with family. But this was different. This was Ruby as Ruby. Completely, freely, Ruby.

When we first took Ruby to the Propeller Dance Company for classes, we sat in and watched an early class. The mix of kids, those with and those without disabilities, was a lovely thing. The mix of teachers, those with and those without disabilities, was an astonishing thing. The kids were all involved, in that early class, in learning. They were imitating moves, doing as instructed ... they were not yet dancing. I wondered if the teachers were the kind of alchemists that could turn leaden movements into golden moments.

They are.

Today, I saw child after child after child have those moments. Transcendent moments of being. Transcendent moments where movement became art and self rose from that hidden place and into public view. Kids with and without disabilities alike shone in moments of pure freedom. And THIS was the dress rehearsal.

People don't understand, for the most part, transcendency and the disability experience. I've heard people speak of people with disabilities who excel at something, some area of human endeavour, and say 'they transcended their disability'. I always quake a bit inside when someone says that. They say it as if disability is something to be risen above, that achievement can kind of nullify the disability. They kind of mean 'he's pretty good for a disabled guy, almost consider him normal, I do.'

I don't believe that one transcends a physical aspect of self, if that's what it means, it would have no power. I think that one transcends ... self - and that's what gives it power. One definition of 'to transcend' reads: To exist above and be independent of material experience or the universe. And this is what I saw. Kids, those with and those without disabilities, transcending for brief seconds ... existing above and being independent of their universe.

We wanted Ruby to attend this particular dance company because we wanted her to have the experience of integration into a life of diversity. We wanted her to be comfortable with the depth and breath of what diversity means. We wanted that.

But we got more.

We got a Ruby who had all those opportunities. But she also, through art, through dance, got the opportunity to integrate into self hood, to discover the bounty and the diversity within. This is why art has always been radical. This is why art is so feared by those in position of power. This is why.

Today, as you read this, we will be attending the show itself. I will watch the whole show but look for those small moments. Moments when the stage is lit, not by the lights that hang from the brackets above, but from the lights that burn in the eyes of those who are captured by, those who are raised by, those who transcend the moment in ... dance.

Saturday, April 21, 2012

"Did you get a cheese pizza?" Ruby asked all fresh faced from swimming, Sadie, her little sister was right behind her, '"Eeese Eatza!" As was our tradition, Mike and Joe took the kids down to the pool and Marissa and I chatted after having ordered the food. We always order from the same pizza place, which is right across the street from the hotel, and we pretty much always order the same thing. I knew that when the phone guy said, after taking my order, "Oh, welcome back to Ottawa!" So, in short, yes, I had ordered cheese pizza for the girls. And Chicken for Marissa, and Spicy Spaghetti for Joe, and pizza with pineapple, hot pepper and onion for Mike and me. Our get together meal is always stress free, everyone gets what they want. Getting vegetables into children will come later in the visit.

"Cheese pizza!" I said in mock horror. "You wanted CHEESE PIZZA!?!?!? I forgot and ordered you pizza with broccoli and cauliflower." Ruby, who is a vegetarian child who hates vegetables, was having none of it. No matter how much I tried to convince her that she was getting pizza covered in 'slimy vegetables' she didn't buy it for a second.

"OK, smarty pants, how do you know I didn't get you a Very Vegetable pizza?"

With a lightness in her voice that I wish I could capture and put here in words, she said, "Because you love me."

How is that for secure?

How lovely it must be to rest so securely in the knowledge that you are loved that you never have to worry about being neglected, or having your wishes ignored, or enduring trickery and malice. How lovely it must be to know that your world is safe and fun.

When I was little, this is how I saw God.

I believed what I was told.

I believed that I lived in a world loved by God and that I was personally loved by God.

In my mind, that made sense to me.

I had a 'blessed assurance'.

Maybe that's what childhood is - a time of believing that all encompassing, all embracing love can exist. Maybe that's what we mean by the 'innocence' of children. Maybe that's what needs protecting. Maybe it's good to have a few years where love can both magical and real.

Even now I remember the shock I felt at being told, with the fervour of absolute conviction, that God did not love me. That there was love, there was an all embracing, total immersion love, but that I did not qualify. I remember the deep hurt of exclusion. I remember the pain I felt at the rejection of who I was by LOVE incarnate.

I never again trusted the world to give me cheese pizza.

For a moment I looked in Ruby's eyes of certainty, in Sadie's eyes of expectation and knew that every day that I can extend their experience of a world in which love exists, love from a human form, love from a cosmic other - I was giving them a gift. A real gift.

And I believe still, if no longer for me, then for them, that if God ran a pizzeria, he'd deliver exactly what was ordered.

Friday, April 20, 2012

Bob Clayton died many years ago now, he was a good friend to me. Even after he moved to Vancouver from Toronto we stayed in very close touch with each other. Some friendships dwindle with time and distance, some don't. Ours didn't.

When Bob died of AIDS, I was devastated by the loss.

This was back in the days when I was working at becoming known as a lecturer and speaker. The funeral was planned on a day that had already been booked and I was expected, somewhere else in the world, to show up and present. I had a decision to make. I decided that I would keep the commitment and trust that people would understand. They did. Or, perhaps, they said they did.

So, on the day of Bob's funeral I was standing, making funny, in front of a room full of strangers. In my mind, the whole time, I mourned Bob, I mourned my inability to attend his funeral, I mourned the eulogy I would not give. But I did what I was supposed to do.

Now I realize that if I had cancelled, a few years later people would not remember that I had had to drop out of the event. And yet, I am faced with remembering always that my friends will remember always that I did not attend Bob's funeral.

It was a mistake.

A couple weeks ago we found out that Ruby's dance recital is this weekend. She's taking classes with the Propeller Dance Company and she loves the classes with a passion. Over Easter she asked several times if she was missing her dance class. She was relieved to know that the classes were cancelled for the holiday. Last weekend, with the recital coming soon, she went to classes on Saturday and Sunday. When I spoke with her on the phone I mentioned she was going to a lot of classes. She said, almost solemnly, 'I love it.'

So imagine my upset and surprise when I learned that I was booked to speak, to a group of parents about parenting, on the weekend of the dance recital. I knew I had a decision to make. And suddenly, I remembered Bob's laughing face. I remembered the ridiculous discussions we had. I remember his apartment here in Toronto and there in Vancouver. I remember the hole he life in my life. I remember making a very bad decision.

In my defense, and it's a poor defense. In human services, it can begin to feel that one is needed more at work than at home. In human services the needs are always greater than the resources. In human services one can lose perspective and thereby lose a sense of priorities. I've seen the same with parents - who have to parent, and advocate; who have to divide time between making money and making family; who end up losing what need not be lost of the life before. Bad decisions seem like good decisions at the time, don't they?

We sat down at the computer and wrote an email. I explained honestly what had happened. I made it clear that I was sorry to cancel but that I really, really, really, wanted to be there when Ruby takes the stage for the first time. I want her to know, without question, that Joe and I will be sitting in the audience cheering her on. We tell her we love her, but words are words and actions are actions. Love is something you do.

Pushing 'send' on the email was surprisingly easy.

I sat back in my wheelchair, seeing the notation that the message had been sent. I swear I felt a hand on my shoulder.

Thursday, April 19, 2012

A few years ago, BC (before chair), Joe and I were having dinner in our favourite Chinese restaurant in San Francisco. It's a hole in the wall kind of place on Polk Street and we've been going there for years. The last few times Joe walked in to place an order, even if we hadn't been in town for a year, they say 'Hey! Canada!' The food, in a word, astonishing. Well, we were there after the pub and before going home.

We chatted and watched as six people with disabilities came in and sat at one of the large round tables with two staff. They were fairly quiet and we soon forgot they were there. A few minutes before leaving I got up to go pee. I'd had several beer over the course of the evening and now it was time to 'spend a penny'. I walked by the table and nodded hello as friendly people do.

Now.

I've always been big.

I'm hard not to notice.

AND ... I had nodded a greeting.

I got to the door of the washroom and swung it open. This restaurant had only one washroom and it was for everyone. I turned towards to toilet to see a woman with Down Syndrome, sitting on the toilet, naked from the waist down. Yikes.

I went into reverse, since I had oiled my transmission with alcohol, I stumbled a bit. And you know what she did?

She waved!

She smiled!

I approached the table and told the staff that there was a woman with a disability in the washroom. The female staff said, 'Oh, my, I forgot, sorry.'

I said, 'The door was unlocked and I walked in on her."

Staff said, 'That's OK, she doesn't mind.'

The fact that she doesn't mind IS THE PROBLEM.

This has happened to me more than once. I've been in England and opened the door to an accessible loo at a Welcome Break and found a woman with a disability sitting on the toilet. Again, that time, she waved. I stumbled back.

Where is the shrieking!!!

How is it that women with disabilities get so comfortable at being seen naked that they aren't startled? That they aren't outraged? That they see this as a moment to MAKE A NEW FRIEND???

I know that it takes longer to teach someone with a disability toilet skills and that more people will be involved than with typical kids ... just because of how long it takes. But does anybody remember that teaching privacy is as important as teaching toileting? Girls who will be women and girls who have become women need to be taught how to be in the world that we live in. How to maximize safety, how to minimize risk.

Does anybody remember the research that says that women with intellectual disabilities are the most victimized group in our society?

Is it that they get desensitized to being naked in public because we get desensitized to seeing them in their all together? Is it that we are so busy with teaching one thing that we forget to teach the other?

The other day I was in a food court and a woman with a disability came out of the washroom, walked up to her staff, pulled her shirt up, exposing midriff and waited as the staff pulled up her zipper and did up her belt. In a food court. With people watching. Neither the staff or the woman with a disability thought for a moment that what was happening was odd. I know you are going to think that I'm making this up but I'm not ... I saw a man watching this, moving his hand quickly under the coat he had laying across his lap. I felt sick.

Wednesday, April 18, 2012

For those of you who work with boys who will become men, or boys who have become men. I am sick to death with what I see when I speak at conferences which have a lot of people with disabilities in attendance. Self advocate conferences, inclusive conferences, parent and children conferences, the works ... I speak at a lot of these. I've always been hesitant to write this but sometimes ...

silence isn't the solution ...

and this is one of those times.

I am at the point that when I know I am going to be speaking at a conference with a number of self advocates attending that I drink less water and cut back on the tea. I pee before leaving, I pee on arrival before anyone else gets there and I hope I'm good for the day.

That's worked for a few years.

But ... a few years later and peeing becomes something that can't be planned around. I am at the age, and all men know when they reach this age, that wearing beige pants is out of the question. So, three times in the past month I've had to go into a bathroom full of men with disabilities at break time.

And every single time.

THAT'S EVERY SINGLE TIME.

Let me say it again.

Every single time.

I go to the bathroom I see a line up of bare bums standing at the urinals. Men with disabilities who have pulled their shirts up and dropped their pants down. Nipples to Knees exposed - bare assed - men standing peeing. It's a shock, every single time.

Get this.

This is dangerous.

Really freaking dangerous.

If this happens in McDonald and a kid walks in and the man turns to say 'hi' ... an innocent hello can lead to disaster. This happens in a bus station and a rape, a murder, an act of brutality can happen.

What are people thinking?

Are people thinking?

If someone has to drop their pants they should be peeing in the stall. The solution is so simple that I can't believe I'm writing it. The best solution is to teach a man to pee without exposing himself - but if that's not possible, there is the stall. If the stall isn't teachable, then think of something else.

But don't go on with someone exposing his entire body to take a pee.

I don't know who taught these guys this. I'd like to say it's institutionalization but I've seen men far too young to have ever trod the land of the long corridor do exactly the same thing.

I talked to a teacher today who has a young man in his class who does this now!!! Teacher is concerned. I am concerned - this is a situation away from turning tragic, lives ruined.

And all because someone is not THINKING!!!!!

Good heavens.

I dream of the day where I go into a wash room at a conference for self advocates and am not reminded of the William Tell Overture, bum titty bum titty bum bum bum.

Enough!

So, if you are responsible for the care of a male - could you check this out and then get to work. I don't want men being charged for sexual offending when they simply need to pee. I don't want someone taken advantage of, raped or beaten simply because someone was too oblivious to teach guys that ...

Tuesday, April 17, 2012

I think respecting privacy is an important part of being a respectful person.

I received an email from a reader about an email that she had received. Someone had written her who had become separated from his brother with an intellectual disability and who now wanted to try to reestablish a relationship. He asked her for advice. She asked me. I asked them both if I could answer that question here. They agreed.

It's important to note, however, that I've answered this question before. Most often from parents who lost touch with their children during the dark years of institutionalization. The question was always full of guilt and concern and heartache. The question was always asked with fear - fear of judgement for decisions made in the past. The question always touched me. I think that the opening of a heart is as beautiful as the closing of a heart is terrifying.

(Note to the fellow asking the question ... if this all looks daunting ...skip down to the summary below.)

These are my recommendations and I encourage you all to join in - remembering to be gentle and encouraging, even while being honest:

1) Examine Motives: It's important to know why you want to reestablish this relationship. If the relationship is being established to assuage guilt, if it's mostly for what YOU need, then be very careful. Remember, the door is closed. Your brother is used to the closed door. Opening that door, without every intention of keeping it open, is cruel. Try to move your motivation (believe it or not that is possible) over to what you will both gain. You will both gain a relationship, you will both experience brotherhood, you will both support each other. Wanting a RELATIONSHIP is different from wanting FORGIVENESS. Don't confuse the two.

2) Expect a Person: This may sound odd, so let me explain. Your brother is now a stranger to you, it might be tempting to imagine him through the lens of stereotype: 'They are just so loving.' Go in knowing that your brother is a full bodied, flesh and blood person, with likes and dislikes, with passions, with interests, with a way of doing things that is uniquely his own. This is actually good news. I couldn't imagine how boring it would be to be with someone perpetually nice. How horrible! So be prepared to spend time getting to know him - explore those interests you find in common. It may take time, but then, all relationships take time. Sharing a bloodline doesn't hold a candle to simply sharing time.

3) Staff are Staff: If your brother has support staff - don't confuse a relationship with them with a relationship with your brother. Unfortunately we 'helping people' can tend to take over in situations like this. You will need to politely, but firmly, push us aside. It's your brother that matters here. Calling and chatting with a staff about how he's doing IS NOT THE SAME as calling him. He's your family ensure they know that. If he takes some time in answering questions or explaining himself, give him that time. It may be easier to ask the staff, but really - isn't time what you want to spend. If you are going to ask them something - ask him if that's OK first. Make sure he knows you respect him enough to let him make those decisions.

4) Staff are People: Because of that be careful. People can be judgemental. Some may wonder about your motives. Some may feel that you are a 'Johnny Come Lately'. Some may actually fear you because they fear losing power. So if you feel a resentment from the staff - well, don't let that bother you - you've made a decision to reconnect with your brother.

5) Connect The Way People Connect: Time together doing stuff that's fun for both is the simplest way to establish a relationship. Discovering each other, discovering what makes each other laugh ... doing with and being with is the easiest way for people to become family. Giving stuff is easier - and we are all tempted towards 'easy' ... but giving time is what's needed here.

Now the tough stuff:

6) Your Brother Has Rights: In all my time in working with people with disabilities I have seen many families reunite. It's wonderful. It's heartwarming. It's lovely. Many people with disabilities that I have known have fully welcomed and embraced the contact when it's reestablished. Many people with disabilities brushed away apologies and simply wanted to get on with being ... a son, a brother, a sister, an uncle, a cousin ... From my experience, the odds are in your favour. But that's not always true. Some people with disabilities after a time apart or a time away are not interested in reestablishing a relationship. Some fear hurt again. Some are wary of intentions. If this is the case, remember, you can't force relationship on someone. Go in hoping but be prepared to listen. This relationship is as much his choice as it is yours.

7) Apologize At The Right Time: If you feel that you need to apologize - do. But choose the time. On first meeting - it should be about joy and the pleasure of seeing each other after a long time. Burdening the first contact with the weight of the past may relieve things for you but may cause your brother to re-live stuff that can get in the way of the relationship. Choose the time. You will know when that time is. It can be, no matter what I just said, on reconnecting. It can be months later. You will know. Have you heard the expression, 'I need to give him an apology?' Apologies aren't giving, they are taking. The only apology worth anything, is change. It may be best to apologize in action before apologizing in words.

Monday, April 16, 2012

Joe and I went for a stroll after dinner last night. For the first time, ever, I am away from Toronto AND I have my power chair. I'd used it all day at the retreat and wanted to go out a bit after supper. This is a huge break from our tradition. We live very quiet, very simple, lives. We have supper, we watch a bit of television, we go to bed and read then the lights go off. We both have very busy, and often very intense, days - so our evenings are full of calm companionship.

We strolled down to the Casino, with no intention of gambling - neither of us 'get it', but instead to visit the shops that are attached to it. I am a shopper. I love to shop. Joe will either join me or, like a patient husband, sit on a bench and people watch while I spend the family fortune. Because I was motorized, he only joined me when I was making a decision on a purchase - to give his opinion - which is often simply a version of, 'Yes, dear. Whatever you like, dear.'

On our way back, we chatted, simply, about stuff.

Again, and again, and again, I am reminded about the ordinariness of this life of mine. Yes, I get my differences, and yes, I honour my differences, and yes, I wouldn't want to be any other way than the way I am.

Yes.

I'm gay.

Yes.

I'm disabled.

Yes.

Those things make me different.

But.

No.

It doesn't make my life different.

Yes.

I experience the world differently than others.

But.

No.

That difference doesn't mean what people think it means.

I just do the same. Differently.

I love our life together. I love our routines. I love the fact that we've made the same joke for over 40 years and we still find it funny. I love the fact that we can be quiet together - but often aren't. I love the fact that our lives have evolved into parallel paths. I love the fact that two oldish men can stroll home, on a cool evening in Niagara Falls - after 44 years together - and still be on our honeymoon.

Sunday, April 15, 2012

Every now and then you get a glimpse, quite accidentally, into how 'Johanna Q Public' sees disability. Those moments are always shocking and always disturbing. That happened to me yesterday.

Vita is on a Retreat. Joe is here with me as I need personal assistance and, let's face it, everyone knows Joe anyway from seeing him around the office. He doesn't attend the retreat, obviously, but he's there for those moments in the day where I need something that I wouldn't feel comfortable asking one of my peers to help me with. When booking the retreat, it was made clear that there would be one person attending who may join us for meals but whose meals were not being paid for by the agency. It was arranged that we'd all get white meal tickets and Joe would get green ones. That way, when he used the ticket, he'd be billed for his food separately. Easy plan, well thought out.

As it happened last night, Joe told me that he'd rather not have meals with us and be the 'only non-Vita' person at a Vita event. He knows he's welcome but he didn't feel comfortable. I'm all about people learning to say 'no' and using their voice to state preferences and, though I'd have liked him to come, agreed that he should choose whatever made him more comfortable.

I arrived a little late and most people were already seated. The area isn't really suited for wheelchairs but I pulled into a table and joined two others. The staff from the restaurant came over to us and said, to me, 'So, you'll be paying for your own then?' I didn't realize at that moment the assumption and the prejudice and the 'world view of disability' behind that statement. I simply said, 'No, he's chosen not to come down and join us'. She had a list of names, she found Joe's name and crossed it off, I gave her mine and we were good to go.

We had dinner.

We chatted.

I talked too much, I'm not very good at social events.

I came back upstairs and found Joe in hotel heaven. He had classical music playing on the computer, as a soundtrack to the card game he had going. He had a beer beside him and he looked wonderfully relaxed. He chatted with me about researching the Titanic and he'd had a great time by himself - he's a nice man. I was really tired as the day had been long, I lay down.

Before my head hit the pillow - WHAM ... it struck me.

She came directly to me. No one else - me. She knew that there was someone there not part of the group, who didn't work for Vita, who was paying for himself.

And she came directly to me.

I'm fat.

I'm in a wheelchair.

I can't be employed.

I can't be a member of a group.

I had to be the person excluded because I was the person who was different.

Her assumption, naturally, that I wasn't one of the staff (let alone one of the Directors of the organization) because of my disability and my presence in the world speaks volumes. The stereotypes of those of us with disabilities run so deep that a woman feels confident that she can tell - by the sight of a wheelchair - that she can 'select out' - by the sight of a wheelchair - the person who 'doesn't belong'. The person who 'doesn't work' for the agency.

It had all happened so fast that I never understood the message behind the moment, but when I did - it scared me.

We are a waste of space.

We don't contribute.

We are obviously unemployable.

and the worst

We don't belong.

If we don't begin to powerfully challenge this strong, deep, prejudice about those of us with disabilities - I fear real danger will arise from that attitude.

Saturday, April 14, 2012

"DON'T LOOK INTO THE LIGHT," my mother always screamed whenever we were anywhere near someone welding. She had us convinced that our retinas would burn away instantaneously. But there he was, on the staircase welding something. I didn't look into the light, my mother would have been pleased, but I certainly looked at the source of the light - a welding torch.

We were in the lobby of the Marriott Gateway in Niagara Falls where we were going to spend the weekend at a staff retreat. My manual wheelchair was in the MV-1 and I was motoring in my power chair. The day before Joe had noticed that there was a small fracture in the frame of my manual chair. It looked like the kind of thing that was going to simply get worse over time. I went immediately into panic - this is my primary way of getting around after all.

In the lobby, looking at the welder, a plan formed in my head.

An equation:

Welder + Something that needed welding = Opportunity Knocking

I asked Joe, who thought the question odd, "Do you think he looks nice?"

After a brief discussion we agreed we had no idea what 'nice' looks like. I was about to approach him when a manager looking fellow came down the stairs passing the welder on his way. I dove in. I explained to the manager that I was going to ask for a bizarre favour. It took me a couple minutes to explain about my chair in the car and the little weld that it needed. I asked if it would be OK to ask the welder. I assured the manager-type-guy that it was totally fine if the answer was "no" - it was just the opportunity and, need I say, THE EQUATION.

The manager said, "I'll ask him for you."

They talked.

The manager came down, the welder following. He asked me questions that I didn't know the answers to - Was the chair made of stainless steel? I wondered to myself, 'Can people answer questions like that - who knows those kind of things?' I said, 'I don't know.' He said he'd take a look at it and if he could he would.

He could.

He did.

My chair is all welded up.

Right there in the lobby of the hotel, my wheelchair went under the torch. I wonder what people thought when they came in, seeing a welder, in a hotel, on a staircase, welding a wheelchair? I wonder if they knew what they were seeing?

The manager saw me later in the afternoon and asked if it all went well. He actually seemed to care about my answer, I assured him that all was now good.

People.

Constantly surprise me.

The welder didn't know it, but not only did he fix the fracture in my chair, he also welded together the fracture that occurs from time to my time in my faith in humanity.

Friday, April 13, 2012

I'm going on a staff retreat this weekend and want to take my power chair with me so that I can fully participate with the activities and with the group. So, I'm taking Vita's MV-1 along. We picked it up today and rode home in it. I'd seen it before. I'd looked in it before. But I'd never been in it before. I couldn't believe the experience. It was awesome.

(I am not paid to write this.)

The ramp slowly came down and once in place held firmly as I went up it. I'm not light as a feather so this part had me worried. Once in I swung my manual chair around and parked in the front passenger seat. Joe locked me down - I think he's waited years to do that - and the ramp came up. It was simply amazing. I've ridden in adapted vans and on the TTC WheelTrans buses and this was simply not the same experience. I understood, exactly, why people protested in the streets to be able to ride at the front of the bus. I looked out the front window, not through a grill or by a fire extinguisher. What a view.

How horrible that I felt privileged.

More ...

I was in my wheelchair. My wheelchair is build for me and my build. It's the most comfortable chair I sit in. It's the right height for my legs, the right width for my hips, has the right lean for my back. So I was in total comfort, right up front, looking right out the window. Amazing.

Their slogan is that they take the ramp and build a vehicle around it.

I think by doing that they also did something else, if I wrote their slogan it would be ...

We gave RESPECT an engine and then and put it on wheels.

Because that's what it felt like. I felt considered. I felt as if someone thought about what might make me comfortable - the dashboard is a disabled person's dream - and then made it. Every single other van I've ever been screamed 'ADAPTION' to me upon entering. I knew that they weren't made for me - that I was an afterthought.

It was interesting to see people look at the vehicle. Now it has the Vita logo and colours on it - but that's not what people were looking at. They were looking at the car - because it's a cool looking car. There was something different about what they were seeing.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.